Yes, We Are Rare, but Please Realize We Are Human First

Rare Disease Day, a global push for rare disease awareness, is less than a week away, on Feb. 28.

As someone with a rare disease myself, I’ve heard the word “rare” quite a bit in my life. It’s a beautiful rallying cry that shows solidarity among people who suffer from rare diseases, which affect about one in every 20 people. We are rare, and we are certainly different, but what I want everyone to realize is that we are still human. 

I stand out because I have a rare form of muscular dystrophy called Duchenne. It’s not often you see a young, healthy-looking Gen Zer using a power wheelchair. My calves are enlarged. No, it’s not because I work out. The muscle I lost because of the disease is replaced with fibrotic tissue. My face looks a little puffy, and I could probably pass for an 18-year-old at 24 — two side effects of long-term steroid use to control inflammation.

But I also stand out for who I am as a person. I’m a naturally inquisitive type, which is why I lean toward journalism in the first place. I have a subdued, sarcastic sense of humor. I’m glad to be alive. I have a passion for video games and stream myself playing them in my spare time.

I try to love people like God first loved me. When life is all said and done, I’d like to be remembered not only for having Duchenne, but also for leading a fruitful life and lighting up people around me.

I understand that having Duchenne makes me rare — it’s pretty obvious. But please ignore the diagnosis as much as you can. Don’t see the disease; instead, see the person affected by the disease. My best friends see me for my “rare” personality, not my “rare” genetic makeup or life situation.

On this upcoming Rare Disease Day, I encourage everyone to think about someone you know who is rare not because of the disease they have, but because of the unique person they are.

We are all the same genus and species — Homo sapiens — whether we have a rare disease or not. As far as we know, we’re the only beings that have left Earth’s gravitational pull and flown to the moon, created wonders of the world, and invented art.

We are all similarly unique. Being rare brings us all together. What we are fighting for on this Rare Disease Day is to change the world so we can be rare for who we are, not what we have.

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Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.